Back from MG vacation
 

After being in apparent remission since Oct. 2007, I am returning form what appears be be just a vacation - a very nice one. I went into apparent remission when I was receiving very high doses of prednisone and receiving plasmapheresis at the same time. After getting pneumonia in September and again at the end of last year, I reflected on what could be behind this breathing challenge. My conclusion was aspiration pneumonia - as I can distinctly remembering choking days before I got sick. Ptosis has returned and well as overall fatigability. I took the smile test this morning and I watched, with interest, my hold on a smile fade.

This comes at a time when I just finished reading Chloe Atkins book My Imaginary Illness, which I recommend to everyone with MG. I don't feel up to dealing with everything again. I actually worked part-time the past year doing something I enjoyed. I want to continue but, things are in limbo. I don't know if I am still recovering from pneumonia or beginning to have respiratory distress from MG. I really don't feel like contacting the neuro (who is great) again.

The funny thing is I have had the "survivors remorse" reaction after I went into remission. I have seldom posted and was even reluctant to talk about the remission with my State MG organization where I am an officer. In retrospect, the remorse was unnecessary. I have enjoyed life without MG, meeting someone wonderful and marrying again after the death of first wife. I also found a calling (teaching environmental science) that would have suited me my entire working career. Has anyone else had as nice a vacation as I have?

Bill

I had an IVIG treatment last week to get me ready for the thymectomy i just got but I felt what you meant by a MG vacation. it made me feel better than i have since I got MG. but the remorse reaction was totally unnecessary i dont know anyone with MG who would ever be mad at you for getting better, that would be just plain evil. I really hope that youre not about to come back into having MG again. best thing i can say is stay positive man. good luck

I am currently in a near remission secondary to having an immune system reboot last fall. I find myself in a strange predicament--unsure whether to commit to activities because I still have no idea if or how long this new found freedom will last. I really have very little recall of how it feels to be healthy.

I wouldn't worry about whether your feelings are "normal" or not. You're having them and just own them and work through them the way you need.

I am VERY sorry that you lost your remission. It's so devastating to have a return of symptoms after a reprieve.

Bill, I am both happy and sad for you. So glad to hear that you had a long remission, this gives hope to all of us. I hope that you are able to heal from your sickness and go back into remission.

I get little vacations from MG, but I wouldn't call it remission, just times when I can function normally. These times don't last long enough, and I have had to quit working. Every time I start feeling good, I get eager to go back to work...for a while I kept working but my MG kept going down hill so I finally quit...and later I did return to work and my MG got very bad and it took a while to recover. I've decided that I am unable to work, I am still looking for something I can do only when I feel good and not have to work regular hours, the perfect (non-existant?) job.

Hooray for the small hope of a remission, no matter how small...I hope for better days for all of us. :D

The Summer before last I felt I was in somewhat of a remission as well. For the first time I thought I knew what it was like to feel somewhat "normal" at least for me, and it was GREAT! I got a job and worked a 40 hr work week, was becoming a foster parent to a lil baby boy so life was good. It had taken me at least 14 yrs to finally get off prednisone and I finally got to see my old face and body again. Although I was still getting IVIG treatments and taking mestinon (only when i felt like), and Imuran I had more energy and life in me I hoped it would never go away. Unfornately that lasted about a year. I began to get bronchitis everytime I caught a cold and it seemed to be often from co-workers and then the new baby so before I knew it I had to quit my job and I was back in the hospital with MG issues all over again and even worse than before, and has continued since. I am now back on Prednisone and taking my mestinon routinely as well as more imuran than I was before. I am now feeling better but its like starting from scratch and its a terrible feeling that you work so hard to get to better and just to feel and see the difference is amazing and then it just hits you again out of no where and having to deal with it all over again is overwhelming I know. I just try to take it day by day and hope that oneday I will be med free or at least feel great again as I hope for u as well.
Good Luck
-Tracey

Well, Bill, I doubt I'll ever experience an MG vacation. It's nice to hear that you did. And congratulations on finding love again. And the professional accomplishment too.

Abby brought up that book a few posts ago. You should read the thread, it's very interesting. I still haven't had the time or the "energy" to read it.

http://neurotalk.psychcentral.com/thread142749.html

I have celiac disease. I fully accept my limitations about food. I found people saying they were "sorry" every time they ate something I loved but couldn't eat anymore. I told them to knock it off. ;) Simply because I can't enjoy beer and a hot dog doesn't mean I would mind if others around me stuffed their faces. I am glad other people can eat what I can't, do what I can't, etc. So there's no need to hide living with MG and being in remission. I think it's frickin' great. I hope you get back there. We need HOPE and talking about getting better is good for everyone.

We have been basically below freezing here for over two months. TWO MONTHS. I would settle for a regular old vacation on a beach.

Thanks for checking in, Bill!

:hug:
Annie

I was in a spontaneous remission for 15 years.

I was able to finish my residency in internal medicine, my fellowship in hematology, and even start a very fruitful research collaboration and develop a small unit.

I grew up two wonderful kids, traveled around the world, and had a truly good life.

update
 

Thanks Annie,

I did read My Imaginary Illness, last week. It was hard sometimes and I had to put it down and walk away for a couple of hours. The format of having the personal story of Chloe, followed by a clinicians viewpoint worked well. I am going to recommend it to a number of medical personnel.

I am better after more antibiotics and mestinon. My doc thinks my immune system thought it should ramp up to meet infections. He thought it might calm down if we controlled infection and it did. I am so grateful. I will hide and watch.

Bill

Back from MG vacation
 

Bill,
I am hoping your setback is only temporary and you will soon go back into remission. I was DXed in July 09 and am starting to wonder if I may be going into remission. I am so hopeful but also scared to get my hopes up. I have felt like my old self alot of days and my bad days aren't nearly as bad. The only medication I am on now for MG is Mestinon and alot of days I don't even need it anymore. I do still notice a feeling of tiredness in my eye on days when I am realy tired and some weakness in my arms and legs but much less than ever before. I am so glad you posted this because I have wanted to ask someone who has been in remission questions but like you felt hesitant because I feel so bad for the people who suffer everyday from this disease. Would you mind sharing your remission story? I would love to hear if it was spontaneous or happened slowly, did you basicly go back to feeling like you did before MG? I look forward to hearing back from you. Your story is so encouraging and I am sending prayers that you will go right back into remission!
Kendra

I went into remission after a series of plasmapherisis treatments, followed by large doses of prednisone (up to 160mg) and heavy duty antibiotics administered IV. What did the trick is up for grabs. I was close to buying it because my asthma got worse, I developed pneumonia, and I developed a port infection. It was touch and go but when I got home from the hospital I felt better than I had in years even though I was weak - burned out I guess. The prednisone was part of treating the severe asthma, although I had been on 60mg, I think, before that for the MG. This was back at the end of 2007. By Spring of 2008, I was weaning way down on pred. and lost 60 pounds. I started dating and the rest was history. I haven't looked back except to acknowledge how lucky I have been. I get strange reactions when I say this to someone who knows what I went through.

This current setback seems to be waning, so I will hide and watch.

Bill